The passage of time allows more reflection, and the 100 responses I received to “Last Letter” tell me that a sequel may prove useful. Many of you have dealt with disease—cancer or otherwise—of a parent, a spouse, a child or a friend. Many more face this future and don’t know it. So, today I will focus on four lessons I learned from being a caregiver, and I hope they will be valuable to you should this ever occur in your life.

Before beginning, let me disclaim that I am not a professional. There is ample literature you can and should read to prepare yourself. I found my resources through the Massey Cancer Center Library. The Cullather Brain Tumor Quality of Life Center at St. Mary’s Hospital is also an excellent resource.

I offer the following four observations purely from the perspective of personal experience.

1. “Our Lives Just Changed.”

At Lisa’s initial biopsy, the nurse was prepared to take six tissue samples; however, after she took the first sample from the site farthest from the tumor in Lisa’s breast, the other five slides were not needed.  The nurse obviously had found what she needed on the first try.

Lisa and I knew she had cancer before the doctor stepped foot in the room. I uttered, “Our lives have just changed.” We were shocked, scared. We struggled to absorb what was happening. When the doctor confirmed our fears we asked all the questions we could conceive, but we were neophytes in fighting cancer and had so much to learn.

The process of voracious information gathering began. Knowledge is power. We returned home and turned ourselves into internet search machines.

Overloading with information, however, became a problem. As we read through websites and blogs, we felt overwhelmed and even depressed. So, I sought out the librarian at Massey to help me sift through the information and separate what was valuable.

Thinking back to the first fearful moment of the diagnosis, I now reflect on the changes I subsequently made. No more golf. Fewer volunteer boards. Less of the fun things Lisa and I had enjoyed. During this initial “shock and awe” of Lisa’s cancer, I had no idea that a year later I would begin a reduced work schedule. Caregiving takes time. 

I immediately grasped the need to improve my conditioning. Caregiving also requires a healthy caregiver. So, I made time every day to work out. I started buying better quality food. I became more disciplined in my sleep habits. Caregiving is a marathon, not a sprint. I had to be in the best shape of my life to provide Lisa what she needed in the way of physical, emotional, intellectual and logistical support.

2. Constant Communication.

Every day I would return home from work and sit down with Lisa to assess where she was. Some days she had been with friends and felt on top of the world. Other days she was in pain, which shook her optimism to the core. On these days we would talk before I worked out, cooked or otherwise prepared for our evening together. All of my plans immediately moved to the back burner and we dealt with her feelings, fears and frustrations as job one.

I found that there are a thousand times a day that something can happen to change a person’s mood. A new pain. A careless comment by a well meaning friend. A gut wrenching interview on Oprah. When a person is sick, a tremor develops into an earthquake at warp speed. My role was to listen, to empathize and to discuss. Everything else was put on hold until this discussion had run its course.

Notice that I did not say that I offered advice! For those of us who are problem solvers, which characterizes 99% of the males in our species, we see an issue and we want to resolve it. Well, settle back cowboy because you can’t resolve this one! There are no certainties with cancer. I learned that there are only probabilities and choices, and as the caregiver my usefulness was in drawing these out. But when it came to the final decision on symptom management or major treatment decisions, Lisa was the decider.

I read in one of my resource books that a key tool in communication is to eat all of your meals together. At mealtimes conversation comes more easily. I learned firsthand that meals are indeed great opportunities for conversation, and the emotional dividend from this time together proved rich and rewarding

3. Stay One Lesson Ahead of the Class.

When I was teaching on the adjunct faculty at the University of Richmond I remember that each class took a lot of preparation. I am sure seasoned professors don’t have this problem, because they have years of lesson plans upon which to draw. A first-timer, however, simply cannot conceive of a semester of lessons all at once. You begin with a course outline, but you fill it out a week at a time, adjusting to the class discussions and staying a week ahead so you don’t get stumped by a smart student!

Caregiving similarly struck me as a planning issue. I had an idea of where things were going, but I needed to adapt many times along the way. I was always asking myself, “Am I ready if things don’t go well?”

A key tool for planning was what I called my “Scary Shelf.” I put all the research materials I had gathered onto that shelf, and I familiarized myself with what was in them. As Lisa’s symptoms progressed, I would pull them down and read ahead. Without preparation it is harder to remain calm in a crisis. I learned this lesson the hard way resulting in many late night panicky phone calls to her doctors.  Towards the end, I became skilled at staying one lesson ahead of what’s coming.  .

I got our legal house in order early on. We would have been shocked when the doctor discussed end of life documents had we not already executed Lisa’s Power of Attorney, Advanced Medical Directive and Do Not Resuscitate.  When an emergency occurs, it is always unexpected and there is no time to search. I had these documents in the bag I kept packed with necessities for any unexpected overnight at the hospital.

Financial planning is important. For some people financial planning involves how the monthly bills will get paid. There are resources, like Legal Information Network for Cancer (LINC), that help patients deal with these issues. Our financial concerns focused more on estate planning.  Several times during the course of Lisa’s illness, we re-evaluated and made adjustments to Lisa’s will and living trust. The decisions we made years ago as a young, healthy couple   needed to be reconsidered. Immediacy of death changes everything.

4. Caregiving Is a Team Sport.

As a person who prefers to give than to receive, the concept of someone caring for me was the hardest lesson of all. Yet, today, understanding the value of friends was my most life altering learning. A caregiver simply cannot be there 24 hours a day. And, even if you could it would not be healthy for either the patient or the caregiver. Caregiving is a team sport.

The more family and friends who are on the caregiving team the better. Lisa was energized by friends and family through personal visits, phone calls, emails and every other form of communication imaginable. We had a huge team participate in the Komen Race For the Cure. Four or five people would spend time with Lisa during each chemo infusions. Cards, flowers and rocks with inspirational messages proved uplifting. Afternoon meditation gave daily comfort, calmness and focus. Lisa evolved into communication central for an army of family and friends who loved her.  .

As a caregiver, I had to learn to concede some control. The network of family and friends took on a life of its own, and I needed to let that happen. I set limits to have personal time with Lisa and to have time alone, but I learned not to shut people out.

There was only one aspect in which I pushed these friends away. “Don’t bring food!” To me, diet control was an essential part of keeping both Lisa and me fit to run this marathon.
 
I came to realize that other family and friends were hurting, sometimes worse than me. I encouraged my adult children to seek professional help to share their feelings and experiences on losing a mother.  I noticed how friends with cancer were particularly affected by watching Lisa struggle. At times, I felt I was more than Lisa’s caregiver, and I became “Caregiver At Large.” What really surprises me is how enriching it was whenever I fell into this role.

So many people cared and wanted to know how I was doing. Fortunately, I used my exercise time, which includes yoga, to reflect and become centered. I had a couple of friends with whom I talked periodically and who asked wonderfully open-ended questions. I had an “impact volunteer” at Massey who kept in contact, and she was my ultimate back-up plan if I needed support. In the final weeks, Hospice of Virginia guided me through the dying process. Hospice is truly a blessing.

As I consolidate these four lessons into a comprehensive observation, I think the art of caregiving is to allow each of the caregiving roles to occur at the proper time—caregiving Lisa, caregiving family and friends, caregiving myself. So, I end this reflective piece where I began. Put your own oxygen mask on first, and then take care of your loved one.

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